Thursday, 31 May 2012

Spoke too soon?

Ha ha! Sod's law I suppose but having posted yesterday, last night I had some mild spasms. Is it Charlie coming or going?

One thing is certain, I find too much of my mental capacity is being used-up thinking about things connected to Charlie. Unless I am able to completely distract myself with some sort of activity I find my mind wanders to the topic. I don't want to dwell on it but it creeps into my consciousness nevertheless.

An echo of my old school reports: Must try harder!

Wednesday, 30 May 2012

No Change

I thought that I'd just post to say that the increased dose of hormone-blocker hasn't manifest any new side-effects, nor has it made any of the ones that I have experienced any more pronounced. There's still the occasional hot flush and I do feel lethargic from time to time but that's about it.

Our Charlie seems to be quiet. I'm starting to feel a bit of a charlatan. Still, as long as Charlie is not making himself felt, I'll live with that (no pun intended).

Wednesday, 23 May 2012

More Hormones

Today, I had the first of the 11.25 mg dose of hormone-blocker. Oddly enough it wasn't as uncomfortable as the lower dose and was over before I knew it. Next injection is scheduled for 15th August (I couldn't arrange it for my birthday as it falls on a weekend).

When I collected the prescription from the pharmacist, I was given a slightly pitying look. I guess that a pharmacist will know the use.

I have noticed one thing lately. Whereas I used to take a fair bit of interest in the news or big issues of the moment, I find that I seem to be ignoring anything except that which is fairly immediate. The Euro crises doesn't seem terribly important any more, climate change? Nope. Not bothered.

Funny how my horizons have drawn closer.

Monday, 21 May 2012

I wonder

When preparing yourself mentally for the worst possible outcome stops being positive and becomes resignation or simply fatalism?

The news that Robin Gibb (of the BeeGees) has died from his cancer after seemingly to have "beaten" it, is proof that it's possibly unwise to believe that it has gone away. I'm all for a positive outlook but is the dread-news of its return not likely to be even worse than the first time that you hear those words?

Perhaps it's because Charlie is making his presence felt again? Am I being hyper-sensitive? Is the fact that I'm due for another hormone-injection 48 hours from now, convincing me that the effects of the last dose are wearing-off? Does the effect wear off? I should do some research or ask the medico on Wednesday.

Is the occasional dull ache near the base of my spine due to Charlie worming his way about or is it completely unconnected?

I'm certainly beginning to notice a return to some of the earlier symptoms. Not as pronounced but once again, I'm experiencing interrupted sleep and this is adding to the lethargy that sometimes overwhelms me.

I'll be interested to see if the increased dose of hormone-blocker increases the few side-effects that I experienced with the lower dosage and whether the relief I experienced is higher too.

Saturday, 19 May 2012

Prostate Cancer - Bugger!

I thought that I might make use of this medium to share my experiences of what is one of the most commonly diagnosed forms of cancer around today.

Unfortunately for me, the cancer that I have is quite advanced and has spread (metastasised). However, not to scare people, it should be stressed that prostate cancer is most often something that men die with, not from. and many die with it never knowing it was there. The most common forms need no treatment, just regular monitoring.

So how did I find out?

For me, the early indications that something might not be right were occasional discomfort when urinating coupled with increased difficulty in fully emptying my bladder.

I'll be 57 in August this year (2012), so not exactly aged. I'm reasonably fit, a little over-weight but not by much. I've been a keen motorcyclist from the age of 19 and in the years since I was able to give-up work in 2004, I've travelled quite extensively by motorcycle seeing those places that have been long on my list of ones to see before I die.

In that pursuit, I'd often spend all day in the saddle and there would be some numbness in the groin in those circumstances. This I just put down to a natural effect of long days and long distances. I did begin to notice a restricted, slower flow when urinating but I put that down to a combination of advancing years and the temporary numbness. It wasn't a persistent problem and seemed to be linked to specific circumstances.

I'm not someone who visits the doctor very often, twenty-plus years between visits isn't uncommon. It isn't that I'm chary of the medical profession or that I wanted to tough it out. Rather, just that I had very rarely any need to visit a doctor.

In the latter part of 2011, being on the bike for more than an hour began to be uncomfortable to the point where I avoided riding it for anything other than short, local trips. Then just sitting anywhere for any length of time started to be as uncomfortable. The best description I can think of is that I was sat on a golf ball situated near the perineum. Along with this was an increasing need to get-up in the night to empty my bladder, an urgency to urinate when the need arose and discomfort becoming pain if this urgency was ignored, either because there was no opportunity to empty my bladder (peeing in public places is still frowned upon in the UK) or when asleep and it took the insistent need to wake me.

For those who are familiar with the film "Green Mile" there's scene where Tom Hanks' character wakes in the night, staggers outside, drops to his knees and pees on the lawn in agony. He then collapses face down in relief once he's finished. This is a good representation of the condition  I sometimes experienced. Added to that was the need to re-visit the toilet within a very short time because I could never empty my bladder in one go.

In February this year (2012), when returning from a family gathering in my car, I was in such discomfort and had to stop so frequently that I resolved to see a doctor.

I'd moved home since I'd last seen a doctor and needed to register with one near my new home. This done, I duly presented myself at my new General Practitioners practice and recounted my symptoms. His initial diagnosis was Prostatitis, a condition caused by an infection, one that is treated with antibiotics.

Once home, I set about looking-up the condition and true enough the symptoms matched but as my GP had rightly decided that a PSA blood test was worth doing before starting any treatment for Prostatitis, I looked that up too. Reading that the PSA test was prone to both false positive and false negative results didn't exactly fill me with confidence.

The time-scale I'd been given, was one to two weeks for the results, I'd be called back once they were known. I was in fact called within three working days and told that the PSA level was higher than expected and that I'd therefore be called-up to the local hospital to hear the results and to discuss the possible treatment. Not expecting to hear for some time, I was surprised to get a call that day making an appointment for the next afternoon.

At the hospital I was given a Digital Rectal Examination. That's more of a surprise for anyone not used to things "going against the normal direction" than it is either painful or uncomfortable. The chap doing it was very pleasant but I vowed that someone is going to at least have to buy me dinner before it happens again!

My prostate was declared enlarged and hard. I'd guessed that much for myself but the next words got my attention. The acceptable PSA level for my age was 4, mine was 55. I gathered from the demeanour of the chap that it was pretty serious but I was still thinking of false positive PSA tests and Prostatitis when I was strongly advised to have a biopsy.

I wasn't too keen. My thoughts were still upon Prostatitis. I asked what the biopsy entailed and when I was informed that it was little or no more uncomfortable than the digital examination, I concurred. After being sent hither and thither to different departments, the arrangements were made to return to the hospital for the biopsy at 12 mid-day, two days later.

So it was that at noon on Thursday 5th April, I found myself with four other men being subjected to the biopsy process. Four of us reported that it was as described, no more uncomfortable than the digital exam. The exception, was me. Owing to how hard my prostate had become, I experienced serious, excruciating pain when the sample material was taken, so much so that they only took 6 samples instead of the usual, planned 12. Discount for pain!

There was no long lasting pain or discomfort but I resolved that if another had to be done, I'd insist upon a general anaesthetic in place of the local.

Part of the follow-up was a course of antibiotics and over the three days that this course lasted, some of my symptoms were relieved. This only confirmed my suspicion that it was Prostatitis and that the biopsy had been unnecessary.

I returned to taking the occasional Ibuprofen when the effects of the antibiotics wore-off and the discomfort started to intrude again. Eventually I was recalled to the hospital for an appointment on Wednesday 18th April. I guessed that things might not be as straight-forward as I'd hoped when the doctor was joined by a specialist nurse.

It was cancer. 90% of the biopsy sample material was cancerous. My cancer was rated as T3, worse than T1 or T2 which are contained within the prostate and can be just monitored to a greater of lesser degree. It wasn't as bad as it could be, or so it appeared without further examination. I was told that as long as the cancer hadn't spread, after some hormone-blocking treatment, I'd be given a couple of options of radiotherapy treatments. One of these involves a probe introduced into the prostate to deliver radiotherapy directly into the cancer. This would mean a stay at another hospital for a few nights while the treatment was carried-out between waking and sleep.

That was a non-starter as far as I was concerned. After the biopsy experience, I did not relish anything being stuck into my granite-hard prostate again. The next offer was a daily, external dose of radiotherapy at my local hospital, for seven weeks. As much as I did not much like the idea of daily trips to hospital, that seemed much more attractive than the alternative.

However, all this depended upon a CT scan and a full bone X-Ray to see if the cancer had metastasised.

As prostate cancer feeds upon testosterone, blocking the production of it is part of the treatment. This is done by an injection. However, the body's response to testosterone production being blocked is to produce more. To prepare the body for the introduction of female hormones (part of the testosterone blocking method), a three week course of pills is required to begin with and after a few days, the injection is given. This would be repeated every three months for as long as the patient can tolerate it or for as long as it's required (until the PSA level falls).

There are some potentially unpleasant side-effects: hot flushes, sensitised nipples, weight-gain, appetite swings and in extreme cases, lactation type symptoms.None are worse than the alternative however.

I've been lucky. Apart from some occasional increased sensitivity around the nipples, an occasional hot-flush, not much has happened. Apart that is from an urge to buy handbags and shoes!

The following Friday 20th, I had the CT scan and the bone X-Ray was scheduled for the following Monday. The CT scan was over in minutes and apart from some sort of intravenous marker, completely unremarkable.

The bone X-Ray would take an hour, a radioactive dye is injected into a vein carrying blood into the bones of the arm and then it's a case of waiting two hours for it to get around the system. I was instructed to drink a couple of litres of water to flush the excess dye out of my system. This reduces the chances of the X-ray being "over-exposed".

While this two-hour waiting period was ticking down, I had an appointment with the specialist nurse who gave me a 3 mg injection of the hormone-blocker. We had bit of a chat about how I was feeling (more on this topic later) and then I was released to while away the remaining time before the actual X-Ray procedure in the ominously named Nuclear Medicine department. Before being sent on my way, the nurse did say that usual practice was to inform patients by telephone if the scans were negative, ahead of the scheduled appointment with the consultant.

The X-Ray was of course painless. It took an hour for the slow scanning process to complete. Unfortunately, my bladder interrupted the process and I had to be allowed out of the machine to spend 15 minutes trying to get rid of the last of the water that I'd consumed at their request. There was a sign in the department that asked patients not to enquire after the scan results. It would be available within two days at most.

When after nearly three weeks I'd not heard anything, my feeling that there was no good news for me deepened. Taken together with the speed at which each step of the process had followed each other up until now, I began to take-in the consequences.

Eventually I received a time and date for a meeting with a consultant oncologist set for 10.20am on Friday 11th May and I duly presented myself at the hospital at the appropriate time.

Again, a nurse was present. The consultant informed me that the cancer had spread. No surprise there. It was in three places in my pelvis and the complicating factor, it was in one lymph node.

The way I understand things, these secondary cancers cannot be treated. Treatment has to be directed at the primary cancer and the complication created by the secondary cancers means that radiotherapy is no longer an option, either because it won't do any good now that it's beyond the prostate or it cannot be targeted effectively once it has metastasised.

When pressed, the consultants opinion was that without the primary cancer retreating, the bone cancer will begin to make its presence really felt within five years. However, the lymph node cancer is a wildcard and may well reduce the period considerably.

On the good side (being positive here), my symptoms have abated somewhat since the start of the hormone-blocking treatment. With that in mind, the dose will be increased to 11.25 mgs, repeated three monthly and after the second of these (in late August), I'll provide another blood sample for a further PSA test in time for my return visit to the consultant in mid-September. The hope is that the PSA level will go down indicating that the Prostate Cancer is being affected through being starved of testosterone.

My consultant did say that the higher dose will mean more pronounced side-effects and as I'm not due for the first of the higher dose until next week, I have yet to discover to what degree this will be. It may be that I will have to remain on this prescription of three-monthly injections indefinitely. Time will tell.

So how is this affecting me?

 Well to begin with it was bit of a shock because I had been "positive" and convinced myself that it was Prostatitis. No-one ever wants to hear the words "it's cancer". Even if it is the most survivable sort. Cancer is the modern bogeyman. We have it drummed into us that it is a killer and in some circumstances it is.

People talk about "battling" or "fighting" cancer. I don't subscribe to that. I'll live with it and its consequences for as long as it allows. I will make allowances for it, I will alter my life and those habits that will make it more easy to live with. It is a part of me. It isn't a welcome addition but nevertheless it is there and sometimes I sense it's presence.

With that in mind, I've decided to give it a name and henceforth 'it' will be known as Charlie. Charlie the cancer.

I'm not always conscious of Charlie's presence. Most of the time I forget him because he doesn't make himself known but every so often I get a twinge in my groin or feel a slight stab in my pelvis. Other times I feel a sort of knotted sensation near my coccyx, usually after sitting or standing for a while. None or this is particularly uncomfortable, it might even be sensations that I experienced before I knew about Charlie or even before he grew in the first place but the new knowledge has made me overly-sensitive to every twinge, pain or  stab that is just a part of growing older daily. Who knows?

What about my mental condition?

Well I've never been one to cry over spilled milk. What happens happens. It isn't bad karma, punishment from on-high, bad luck or destiny. It's a physiological disease. I've never had anything bad in the way of illness, injury or inherited conditions. Many people do and they live for longer with much more debilitating consequences than I have so far experienced. I still consider myself one of the more fortunate and I will (I hope) continue to do so even if or when Charlie becomes more intrusive.

I have no religious faith or beliefs. I am not afraid of death, perhaps the manner is a bit scary but I'm reassured to hear that pain does not have to be a part of the consequences. It is the unknown that creates fear. I know that death is the end, no different to the lack of consciousness when we sleep only it is permanent. I have no fear of that.

I long ago recognised that at the end of my life there would be a list of things that I didn't get to do or see. Even with the time and the financial resources to reduce the list, if you have an ounce of curiosity in you, you'll never do everything you desire.

So far the most unpalatable, crushing thing in all this is off-loading it onto others. I dread the degree of upset that my news creates and I thought long before breaking the news. If it wasn't for the fact that I've had to accept certain changes to my life that either affect others or cannot go unexplained without causing concern, possibly even hurt, I'd rather have said nothing.

However, having told people, I'm now of the opinion that telling everything is the best policy and it's to that end that this blog is taking shape. I intend to use it rather like a diary. I won't make daily entries but I will do so when there's something to say. I'll apologise here and now, some of it will be introspective and it might open my thoughts too far for comfort. Looking inside my head might not be a very nice experience. I'm not going to talk about other people, at least not by name and not to their detriment in any circumstance .

As I will only make an entry when there's something to report, it could become a litany of unpleasant reading. Please try to remember that for every entry about some thoughts or discomfort, there were many hours of equilibrium where no such things accost me.